24/7 Most Common Symptoms

Hello Everyone,

My MAV/Vestibular Migraine symptoms are 24/7 and even when they are not as bothersome, there always there to a slight minimum. I was wondering for those who have 24/7 MAV Symptoms…which symptoms are the most noticeable all day long? Mine are:

*Tension/Tightness in and around my head
*Motion and slight throb/pultz in my head

Those are the two symptoms that are always with me to a certain degree. If my day is more stressful, or i skip a meal or did not have a good nights sleep, etc… i can expect these above mentioned symptoms to increase.

Anyone here at this Forum with symptoms that persist to some degree everyday…24/7…please share and let me know what symptoms are most prevalent.

Thank You…

Joe

Mine are 24/7 although now that I’m on the meds it’s a lot more mild (praying it never gets worse again).

My 24/7 symptoms are:

Left ear blocked/popping
Internal rocking
Brain pulsing/zinging (always cranks up in the evenings)
Random vision (like looking through a heat haze)

Everything is amplified by 1000 at period time. As if being a woman isn’t bad enough!!!

Joe, mine are the same as yours. When I’m at my worst though, add to that nausea and a constant mild headache.

Joe,

I sway slightly to the right,
Rocking when standing still,
sensitive to motion when I turn head to the right.

These symptoms never ever ever go away. They’re there 24/7.

Greg

— Begin quote from “beatles909”

Joe,

I sway slightly to the right,
Rocking when standing still,
sensitive to motion when I turn head to the right.

These symptoms never ever ever go away. They’re there 24/7.

Greg

— End quote

All three are identical to me, except I sway to the left.

Sleeping is horror for me. I constantly worry about waking up in a spin since I sometimes wake up with a slight rotating feeling.

All symptoms reduce/disappear when I take low dose valium, but I don’t want to take that every day, so I just soldier through it. May try zoloft.

Mine are a constant swaying feeling while standing still, or while laying down. And also, I am anxious and sometimes have neck tension. Sometimes the back of my head feels tight (like where my neck vertabrae connect to my skull). I also have the pulse in my head, like you said. Glad I’m not alone on that. I was unsure that my condition was MAV because I never have had a migraine, although my aunt and grandma suffer from them.

Hi Joe,

my 24/7 symptoms are a constant disequilibrium - a false sense of motion/movement/falling/swaying. It’s at a fairly constant ‘baseline’ level, and then occasionally ramps up and gets a little more severe. When this happens, the band at the back of the head, between the ears, tightens and starts aching, and usually the top of my neck (where it joins the skull) starts aching and tightening too. I sometimes get a mild headache, but generally not. I very occasionally get what I call ‘attempted mini-spin attacks’ lasting just a second or so each - these have me reaching out to hold onto something ‘solid’ like the desk or sofa, etc - it feels like the world is suddenly going to spin/rotate (vertigo) but this doesn’t usually materialise.

Tony.

I also have the swaying feeling at times and disequilebrium can be off more times than others. I don’t fall very often…only on occasion. The back of my head isnot generally a problem…it’s the sides and temples of my head where i tend to feel the tightness and tenseness. Most of the time no pain just basic tension/tightness and motion…but my left side is the most vulnerable side…that is for sure. Most of the time if i have a mini-spin it’s generally when i’m getting into bed or getting out of bed or turning over in bed. I can also end up with a mini-spin looking under dressers for cat toys or other stuff. Have to be careful.

Joe

Hi Joe,
Ummmmm, The most annoying and persistent Symptoms I have are.
Sorry this is so long winded joe.

1: 20 minutes into Laying down in bed, my legs or arms start to become aggravated by a weird gnawing type feeling, it can run down my whole body/side into my back …arms and legs and most annoying my bum/bowel: shock:

I spend time (half asleep) trying to stretch my legs arch my back only to end up awake sitting up in bed with a head full of (static… rushing…Confusion) and a strobe flashing in my eyes.
There’s no way I can fall asleep during this time … so I get out of bed and sit up.
There is a dull but electric type gnawing running down my body is continuous and sometimes will make my leg/foot/ arm jump or shoot out in mid air.

I’m not sure if it’s IBS or Restless leg syndrome or just my migraine triggering all these symptoms, but they always come hand in hand with the flashing strobe light (aura)
And after getting out of bed to walk it off for a few minutes the strobe Aura disappears.
I wish I knew the answer as to why the laying down causes instant migraine aura… And other symptoms to happen like clockwork most nights.
it often wakes me up , leaving my sleeping patterns messed with, and we all know how that can mess with our migraines.

I have to admit …It frightens me as the only thing I can think of is… Somehow my body/neck is cutting off blood flow… in some way.
If I’m face down on my tummy I feel pressure in my neck and face, like the blood is rushing and pooling there.

Having had 3 MRI’s with contrast and one without… my Question would be …why wouldn’t a blood flow/narrowing of a vein … not be picked up? And would it be worth asking for a CT scan?
From what I’ve read/been told… The MRI’s are better for picking up organic problems though I wonder if they’d pick up on vascular spasm?

2: being on auto pilot during a migraine, which can render me unable to speak without slurring and missing words sometimes (stuttering) and brain rushes that make me lose my ability to keep up with conversation , also If I have a migraine … While cooking or doing simple tasks… it’s just downright dangerous… I fade out and have several burn scars bumps and bruises on my body, due to being on auto pilot.
and **Not being fully aware of what I’m doing…**It’s embarrassing when people see me as I sound and look drunk…dazed :shock:

Those are the 2 symptoms that bother me the most…
And probably the worst of my symptoms matrix.

Joe I like this post as it gives us ranting venting time:=)
jen xx

Rocking in head, nausea, disequillibrium

oh let’s see…

constant sensation similar to being in a race car with the gas pedal floored
constant sensation similar to an elevator stopping or starting, but continuous instead of momentary
frequent falling
brain fog
motion sensitivity… all motion feels exaggerated
light headed
balloon head feeling
sound/light sensitivity
multiple variations of tinnitus/partial hearing loss

Fiona,

Can you elaborate when you say “Rocking in Head”? Are you basically saing that your body is Rocking but the Rocking is mostly felt inside your head?

Joe

General feelings (better or worse, but 24/7) of:

–wooziness or lightheadedness

–motion sensitivity

–“whoosh” if I move head too fast

–“whumps” in my head (with burst of static in hearing-loss ear) when moving eyes when I’m tired or between sleep/wake

–“carsick in the head”

–“dizzyfog,” as I call it

–minor imbalance (but I never fall)

I feel rather dependent on somatosensory input for stability (having a hand on something when turning, having feet wide apart and firmly planted when moving head/upper body, etc.).

Nancy